Thank you for attending the 2017 Nashville Patient and Family Conference.
But when the strong and active mother of two received her
“I was having a pretty awesome year. I was very well known at school and I had a boyfriend.” She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started.
"I just wanted to live the normal life of a teenager," said Ricky. But it just wasn’t meant to be. When he was taken to the hospital to find out why he’d become so weak, he passed out because he had so little blood in his body.
Paroxysmal nocturnal haemoglobinuria (PNH), an ultra-orphan disease with a prevalence of 15.9 per million in Europe, is a life-threatening disorder, characterized by haemolysis,
If you are interested in learning more about your possible participation in this clinical trial, please complete the form. Your information will be forwarded directly to the sponsoring company.
Over the past few years, several documentaries and dramas about people living with aplastic anemia have been created by independent filmmakers and by patients themselves. These depict the everyday lives of patients coping with a diagnosis, the challenges presented by treatment and the hardship caused by inadequate medical insurance coverage.
Whether fictional movies, or stories about actual patients and families, these portrayals bring you into the world of bone marrow failure disease in an uncompromising and straightforward manner.